Janus

Janus is the Roman god of two faces - one looking backwards and one looking forwards; the month of January, a time for reflection and a time for looking forward is named for Janus - and even more pertinently this year, winter storm Janus paid us a visit in the Eastern US, dropping over 13" of snow in Philadelphia, but just about 7" west of the city where we were.

After Winter Storm Janus

Now, at the very end of the month (as I am writing - likely it will be February by the time anyone wakes up and reads this, but I'm back in Scotland with a turbulence-traumatised-jet-lagged body(!), so I'm still counting it...), having travelled back after spending xmas and new year with my parents (and fitting in some doctors'/ physios' visits) it seems like a time to reflect.


Reflecting is easy.  Reflecting is what has happened, what's in the past; what we know.  What we would do differently if we encountered a situation again.  As they say, hindsight's 20/20.


Looking forward is harder.  I actually believe looking forward is harder for everyone, most people are just lucky enough not to be aware of that.  People make plans, set dates, book holidays, plan weddings, families, travels, even envision whole lives for themselves, for their loved ones -  and in a split second - a twist of fate, a mistimed moment, a misjudged movement, a slip - anything, whatever we want to call it; those of us who have experienced that split second - in all the disguises it wears - know.  We know that planning is a joke.  Looking forward is a joke.  People tell us exactly what they have planned, month by month for the next year and we smile and nod and hope it happens for them, but - and I know this from talking with some close friends who have all experienced some sort of personal trauma which has turned their lives upside down - 'we' don't really believe them.  We've learned that plans are great - they're exciting and appealing and, sure, we'd love to be making life plans too, but we're always aware they are really just ideas - things we'd like to happen, but we have learned nothing is guaranteed.

And it's not that we don't make plans in a negative way, or even that we don't attempt to make plans, but we just have this awareness that we're making a plan, it sounds great, but if it changes, we're also ready for that because we know how fickle the universe is.  We know.

January is always a time of reflection for me.  Even when I try really hard for it not to be, I simply can't help it (a bit like making plans!).  If I really think about it, I can go right back...

January 2005:  This is actually the year that my life was turned upside down. NINE years ago now.  Not that I really knew that at the time...  I got a virus - my mum had it too - mine just didn't go away.  I truly never understood what fatigue was until this time - it's NOT like being tired.  Mum moved back to Edinburgh and between the support I got from her (in every possible way) and the support I got from my wonderful tutors and lecturers on my MSc course (who staggered hand-in dates, let me run my MSc experiments from home, and offered every kind of support that was available to me, I was able to push through and finish my MSc.  Despite not being happy with my overall grade (and having been repeatedly told I should be proud, not disappointed!), I DID complete my MSc.  I then suspended the PhD for a year, went to Florida to stay with my parents for a year, with every intention of returning to Edinburgh and beginning the PhD in 2006.

January 2006: By this time I was ILL.  This was my worst year, with all the (as yet unknown) Lyme disease symptoms continually getting worse, spreading throughout my body and causing cardio and neurological symptoms along with a complete depletion of energy levels.  Looking back to that time is surreal.  I remember not being able to walk; spending all day in bed with the sole goal of making it downstairs for dinner.  I remember sliding down the stairs on my bum, holding on to different things to support myself so I could walk to the kitchen table,  that absolute minimal effort taking so much out of me that I could not even chew my food; and my Dad carrying me back upstairs again.  I remember it with such a strange 'detached-ness' - surely it didn't really happen to me, but it did.  I remember needing to borrow/ hire a wheelchair anywhere we went; not going to sleep at night for fear my head was going to explode with the horrendous headache I had.  I look back on that time and it very much seems a surreal blur, but somehow, I survived it.

January 2007: This was the year when things began to change... kind of.  I learned about the microbiological theory of chronic fatigue syndrome - still my 'official diagnosis' (i.e. we don't know what's wrong, go to bed and waste away; better yet - see a psychiatrist, actually, I wasn't even offered anything like that - I know people even now, who are though).  I learned about allicin, my very foggy brain attempted to learn microbiology and I took some supplements that began to change things.  Ultimately they definitely stopped me getting worse; they gave me improvements with some things, but looking back - they seemed huge at the time - they were minimal.  What they did was give me hope - this wasn't going to be this bad, forever.  It was the year I got kicked off an online forum for daring to suggest to people diagnosed with CFS that something might actually help them.  Honestly, sick in my bed, a member of a website (lets call it 'cloudy chums' - a reference to the difficulty in thinking and sharing those experiences with others in the same position) and eager to share my progress, and maybe help others.  The NHS's approach to CFS/ME/CFIDS was to 'convince' people through cognitive behaviour that they had to accept they would never get better.  Turns out they were pretty good at that - shame they didn't put the same resources into some actual helpful research....  My improvements may have been minimal in the big picture, but were HUGE at the time.  I could stand up and have a shower, wash my hair on my own, walk for short periods without a wheelchair being required.  Those WERE the first steps of that recovery.  Even then, I never knew how complicated THAT recovery would be.  Everything required careful calculations (and still does) - how much energy did I have?  How would I feel after doing X? Were the repercussions worth it? .... etc.

From 'The Spoon Theory' by Christine Maiserandino
(Click for her wonderful analogy)

January 2008:  I had continued to make progress throughout 2007, albeit very slow and careful progress.  I was unable to suspend my funding for my PhD any longer  - I had been ill too long - another reason part of my potential was taken away from me - no more PhD funding, it's only acceptable to be ill for a short period of time.  However, I didn't want to go down without a fight.  I spent 3 months (almost) at the beginning of the year trying to get back into it.  I moved back to Edinburgh and ran a set of experiments.  I was living on anti-nausea medications and red bull - and pro plus.  I would get home at night and have no energy to make or eat dinner.  I completed a set of experiments, but I undid all the hard recovery work I had done leading up to that.  I made the decision to give up the funding that year.  Ultimately, it wasn't a hard decision because my health had to come first, I just hated that I had to do it.  This was the year I had my official Lyme diagnosis - confirmed by spirochetes in my blood cultures.  Suddenly a whole new world of microbiology - with treatment! - opened to me.  Of course, my NHS tests were negative and that door slammed almost before it opened.

January 2009: In the first few months of 2009 everything changed.  My Dad's job took him to Pennsylvania where Lyme is common - PA has one of the worst infection rates in the US, and one of the highest deer populations.  A friend recommended a Lyme doctor, and an immigration attorney.  Wow! A place where there are actual Lyme specialists.  I had never heard of that - as dumb as that sounds now; there is a HUGE amount more information available online about Lyme now than in 2008.  The visa I had was actually the same one required for medical treatment and therefore I could move forward that way, with an awesome Lyme doctor, and an awesome immigration attorney - both of whom are very special friends to me now.  It might have been  positive news year, doesn't really mean it was a good year - basic logic.... if you have an infection (one of the most complex known to man) running freely in your body for 4 years (or likely longer before I became symptomatic), it's going to be a lot harder to get rid of than if you catch it early (YES!! IF YOU FIND A TICK, GET CHECKED AND GET ON ANTIBIOTICS ASAP!! I CANNOT STRESS THIS ENOUGH.  AND YES, I AM SHOUTING!!). The first choice of drug is an IV antibiotic - these are about $1000 a week, plus a PICC line (a permanent IV - to prevent a zillion injections a week, which is also expensive); this was simply cost prohibitive for us, with no health insurance for me, as a visitor.  Using regular antibiotics is still effective, there are just more side effects, especially in trying to get higher doses into the body.  2009 was spent dealing with horrendous 'herx' reactions, vomiting, and changing to a different antibiotic when my stomach could no longer tolerate one type.  There was improvement though.  I knew it was going to be a slow, rollercoaster-ride of a process.

I'm pretty sure I've put this in before, but I really can't stress to anyone enough how important it
is to get early treatment for Lyme disease - if you have ANY of these symptoms (especially in combination) and have been in a Lyme-infested area (almost anywhere now),
PLEASE harass your doctor until you are sure you are ok!

January 2010: This pretty much continued as the latter half of 2009.  I was getting better - the head-exploding headaches had eased; my resting pulse was under 100bpm, I could shower, wash my hair AND shave my legs in the same shower! (This was a big deal).  My energy levels were still not great, and every now and then we would get 'stuck' and take a break from the abx, switch to a different type; try different herbal supplements mixed in, etc.

January 2011: Lyme-wise, I had tried stopping my abx a couple of times only for the giant hands to reappear under my skull, squeezing my brain and causing the horrendous headaches again.  I also would just sleep - constantly - at those times.  I started on one abx (azithromycin - which had gone from $800 per month after its patent expired, to a more affordable amount making it an option), once a day, and it seems to keep things under control now.  I recognise the symptoms of Lyme 'taking over' and at these stages, an extra dose for a month usually stamps it back down again.  There are many issues in the news about the overuse of abx, but I have never had side effects because of long term use (the ones that made me sick can make anyone sick, used normally - or even used as a prophylactic against malaria for travellers).  I do keep a careful diet, take a good probiotic and digestive enzymes, but I don't eat red meat (at all), or factory farmed dairy products - I eat organic.  It's possible people eating a conventional diet are exposed to more abx - in the US 80% of abx use is in farming.  THAT never comes up in the news when doctors are discussing they won't give out abx (this doesn't change for a cold/flu - they are viral, so abx are genuinely useless there).  

In early 2011, I decided I could, and wanted to, go back to University and get my PhD - it had been my goal, my focus all along.  I was accepted back on to the programme and started in September.  Unfortunately almost all the funding had dried up, there were very few scholarships (and I did not get one - really, having done nothing for several years).  However, my plan was to fund my PhD with my 'accidental' jewellery business, borne out of my hobby, that had the potential to carry me through.

And then, of course, came June 2011 when that split second happened - I slipped on the stairs.  It was 11am, I was carrying some laundry downstairs in my left hand, flip flops on, hand just resting on the top railing as I took my first step.  I can remember it like it happened in slow motion - I slipped, felt my feet completely disappear from under me and swung and dangled from my arm, all in a second - landing a couple of steps further down, sitting on my bum, still holding the laundry in my left hand, and with my right hand still holding the upper railing.  When I went back, much later, that railing is about 2 inches higher than my arm can stretch to (I later tested with the left one).  I screamed out as I fell - got a fright, honestly saw myself tumbling, head over heels down the entire wooden steps.... probably why I gripped so hard.  My mum was home and came to see what the noise was.  I also remember this in a very surreal way.... the main bits being "why is your arm in the air?" - I looked at my arm as if I had no idea it was my arm.  I didn't know why it was there, and I couldn't move it.  My mum asked if I wanted her to try to move it.  She did - very carefully.  We now know she 'reduced' it - and that it was an inferior dislocation:

From Wikipedia:
Inferior dislocation is the least likely form, occurring in less than 1% of all shoulder dislocation cases. This condition is also called luxatio erecta because the arm appears to be permanently held upward or behind the head.^[7] It is caused by a hyper abduction of the arm that forces the humeral head against the acromion. Inferior dislocations have a high complication rate as many vascular, neurological, tendon, and ligament injuries are likely to occur from this kind of dislocation.

Strangely, it wasn't instantly agony.  I did say to my mum as I sat on the stairs and she had just put my shoulder back into place "this doesn't feel good".  She now says that was the understatement of the year.  I had zero movement, and the pain built as the day went on.

Of course I was supposed to fly back to Scotland the following week (see this 'planning' thing.....) and that was delayed.  There's a lot that happened after I did go back which I feel ready to write about soon, but for the most part, my 'shoulder story' in on here, so I don't need to go into detail about all that now.

January 2012: 6 months into my shoulder injury, things were not healing, I was not getting appropriate treatment and I was struggling with everything - my PhD, university, living alone - life in general.  I actually can't believe it has been two years since then.  I went to PA for 6 weeks over xmas (Dec 2011-Jan 2012), with research work to analyse, and I was there until September 2013.  I think the full details are for another post - I was unable to write them at the time.  And with the pain and stress on my body, the Lyme symptoms were reactivating and becoming more erratic too. That journey definitely was not (is not) over, and little did I know the shoulder journey was actually going to be worse.

2012 was an unbelievable year.  I swear when I tell people I think I wouldn't believe myself either.  Definitely quote of the year, by the wonderful Dr G Williams who diagnosed me in Philadelphia: "There's pretty much one guy in the world who can fix this for you and he's in Kentucky. I think you need to go to Kentucky and see him." Cue cartoon style *jaw drop* from my mum and me. Turns out he was right....

Surviving 2012 was the biggest challenge I have ever faced.(maybe until 2013)  Looking back, when I remember the true pain and horror and unknown that I felt every day, I would have gone back to 2006 - and that's really saying something.

2013: January came and it became 'I can't believe my surgery was a year ago and this isn't any better' - an expected 8-12 month recovery was clearly not in sight.  Much of that is documented here, although I tend to write about the positives on my blog.  Last year I was facing the possibility of never being able to use my arm again; of not knowing WHY things were happening the way they were; of being in severe pain forever - researching ketamine comas and botox therapy, both experimental, but with a possibility of easing pain, even if it was by changing the pain centres in the brain, and by paralysing muscles (respectively) - nobody had better solutions.  The future seemed to be a big black wall just staring me in the face, with no indication of what shape or form it might take.

Towards the end of the summer, I found a new nerve doctor, also an orthopaedic surgeon and  at the moment, this is the hope I have found.  Everyone seems pleased with a feasible answer to the 'puzzle' about why I have not been healing; but it is still going to take time to see if it IS the final answer, or simply another piece of the puzzle.


So......... January 2014.  Here I am.  I can look forward with hope, hope that finally, the best doctors and physios I have working together for me have found the reason for my severe pain, and for my slow healing; I can hope that this will lead to better pain relief - although in what form, nobody has any idea - I am already taking enough meds ("these should knock out a horse" kind of meds), and not getting true relief, only a slight easing of pain.

Ha ha... not even joking though!

When I look back and I reflect upon what I HAVE managed to come through, it should give me encouragement that I CAN keep going.  But in all honestly, it is exhausting.  I am going to try to be more honest about things this year.  Waking up and feeling the agony searing through my body before I even open my eyes is wearing.  Making any effort to sit, to be sociable, to go anywhere - and before that, simply getting washed, dressed, finding the right clothes that are comfortable enough for the pain that day before I even contemplate what I'm actually going to do makes the simplest things into huge challenges.  Having an outfit planned before I go to bed the night before seems like a good idea - but getting dressed, and realising that the top is too tight for today, a strap presses a sensitive part of my shoulder which has become inflammed overnight; or the top presses a painful part on my ribs that have come out of place again; or squeezes my upper arm if it's swollen, making my hand go numb... and more... these all mean I have to change and find something else - this involves getting undressed again, then trying something else, seeing how that feels (sometimes repeat, repeat, repeat..... sorer, sorer, sorer) - it doesn't matter how organised I think I am, something else always takes over.  Sometimes it is the sweat, caused by the pain, which means I have to change before I've even left my bedroom because I don't want to wear sweaty clothes all day.  The effort required for all that makes me feel like I've practically done a workout before I've even left my bedroom...... which requires a rest, a lie down - something to calm my racing heart, stop the sweating, wait for the black sparkling lights and dizziness to subside, and beat the overriding 'let me just go back to sleep' feeling........... it IS hard; and it IS frustrating.



So as I look back to where I have come from, I know that I have survived things I would have never thought possible and when I look forward I hope that on those tough and challenging days, that is the thought that always remains with me.

.... for something BETTER!

http://www.pinterest.com/gmun22/

Optimistic eyes

I've missed a couple of days... partly because I have stuck to my painkillers + energy drinks (+ sheer stubbornness) = ability to do things and go places; and partly because 2 days of that meant I slept all day yesterday.

Today was a beautiful day - the kind of winter's day I really love here: cold, but with a bright blue sky and the sun shining.  Mum and I went out a walk.  Or, as she calls it, at my pace, a stroll (definitely more accurate).  It's the first time I've been out a walk for several months and we did walk slowly, but an estimated ~2 miles in total.  A two mile stroll is a major achievement for me - and focusing on the little achievements (anything that makes us smile!) is important, when life becomes 'step-by-step' or 'day-by-day'.

It wasn't an easy walk for me - and it really was at snail's pace, with some rests and pauses - but the fresh air felt really good.  We did a circuit around our neighbourhood, and then continued and did another one across the main road, and back home.  It's amazing how natural it is for our bodies to adapt in ways we don't even think about.... until we can't do it - only then do we realise how much of an effort we make, entirely unconsciously, walking up and down little slopes or hills.  I know walking uphill (I'm talking a slight incline here - nothing major) is hard, and I know it requires rests because it makes breathing more painful and my 'stuck' rib cage attempts to expand further so my lung can expand, and it can't.  I know to stop, take some breaths (sometimes hunched over) and then I can go on - but it is much more reassuring to walk with someone beside me, just in case.  I hate saying that, but unfortunately, right now, it's very true. (Even more unfortunately, also justified.)

However, today I learned that going down a steep hill is harder than going up one! (Even a tiny, short one, it's the incline that tortures!)  It came to one of those points where my brain knew what to do, and my body didn't.  If these didn't hurt so much, they would be almost funny... describing them is quite difficult.  I've tried to explain it by suggesting to someone: imagine doing a somersault (I was speaking to someone who couldn't somersault) -  you know the motion, the movement and the shape, but you can't just do a somersault.  A better example would actually be to imagine what it feels like to do a somersault underwater (everyone's done that, right?  Is it only me who thinks that's incredibly normal...?) - you can't hurt yourself underwater, it's fun, easy, and anyone can try it - but you can't just transfer that to a gym (or a park) even if you know what it feels like.  It's not the best example, but it's the closest I've come to feeling like the person I'm talking to might, possibly, be able to imagine what I mean...  Except that I'm talking about something really simple - walking down a hill - which shouldn't really be comparable to a learned skill like a somersault.  But it is.  As strange as it sounds - and it felt stranger! - my body didn't know how to walk down a hill.

Everyone knows when you have an injury, often another part of your body compensates for a while until the injury heals.  Quite often, we're not really aware of it until the other part of the body that's doing more work begins to niggle too.  This was like that, except I was slapped in the face with it - my body's 'compensation attempts' failed miserably.  To go down a hill, we naturally lean backwards to distribute our weight and walk without losing balance.  My muscles don't have the strength to do that (plus it hurts so much that they start to spasm - it's not a case of just sucking it up and dealing with an achy muscle type of pain; it's more of a black-sparkles-dizzy-nauseating-blackness inducing pain).  My brain seemed to be trying all sorts of ways - my right foot on tiptoe (didn't work); twisting my hips (didn't work); various ways of limping (I really never knew there were so many) - I actually stopped and had to think: how can I do this?  Ridiculous! It wasn't a big hill, we were nearly home, so I let the weird twisty-tip-toed-limping movement take over and got to the bottom of the slope as the black sparkling darkness really was descending.  After refusing to take my Mum's arm for the hill, I clutched at her for the last minute until we got across the road and to the front door and I could lie flat on my back on the sofa.

I'm counting that as a win......

http://www.pinterest.com/gmun22/inspirations-for-life/

Recovering from shoulder surgery: the BRA conundrum

This post is inspired by a search that showed up on my blog stats this week, and was something I have had to think about a lot over the past two years, but especially since my surgery....

Inspired by a search from google: 

"how to find the best bra for after shoulder surgery?"

This is a real issue! Since I have thought so much about it this year, and other people are obviously looking for the information too (and I've searched myself.... with not much success), I figured it was worth an entire blog post!  Finding a good, comfortable bra is never easy anyway - add in any kind of injury/ pain/ shoulder problems to the affected area and it's an entire bra minefield out there!

I can count 16 doctors and 5 main physios/ shoulder therapists I've seen specifically for my shoulder.  ONE of the doctors was female and ONE of the other therapists was female (and both were pre-surgery).  So, basically, the majority of my shoulder-specific, surgery-specific, and post-surgical care and rehab has been carried out by males..... most of whom, I am quite sure, would have no clue as to the best answer for this question!

To get a bit personal first... I actually lost a LOT of weight between my injury and surgery (mainly from the pain related nausea/ inability to eat, plus stress on my body, I guess) and was borderline underweight with a size 0 being too big at the time of my surgery.  At that time I was wearing soft lacy-strapped tank tops I could step into (nothing tight could go over my head).  I am very grateful that I didn't have to worry about the bra issue until a few months after surgery when I - healthily - started putting on some weight and getting a little shape back again.  However, I think I have bought 6 different styles of bra in that time - all of which have helped (or hurt) at different times.

My main requirements, at various times in the (ongoing) healing process:

1. no metal digging into my spine or shoulder blade

2. no wire digging into my ribs, or the lateral side of my scapula, or under my arm

3. no straps, or very very very very soft straps (and no metal bits in the wrong place)

4. or (some days) racer-back straps - depending on what part of the shoulder is sore (or the sorest), these avoid touching the shoulder blades and come closer to the neck rather than putting pressure on the actual shoulder capsule

5. no seams, or squares of thick material sewn together and digging into my ribs/ scapula/ shoulder

6. Something I can fasten myself!!

..........a) something I could initially step into,  then progress to putting over my head - no crazy reaching behind my back, or attempting to 'swivel' one-handed!

.........b) a front fastening - no crazy impossible reaching or swivelling required

..........c) no fastening - even better (e.g. bandeau style)

7. very adjustable straps...... perhaps not the best look for every shape, but definitely necessary to ease pain levels/ increase comfort levels either throughout the day, or on bad days ........ ideally without metal bits that dig into you anywhere - don't think I solved that conundrum really... just finding the right spot for the adjustable sliders has worked for me.


Bra #1: The ultimate in comfort
My favourite, definitely, has to be these rather shapeless, racer-backed, but wire-free, seam-free, can-step-in-and-out-of-them, don't-even-have-to-wear-both-straps by "Barely There" (note: it may say you can wear them strapless -this does not work.  Except maybe for 5 mins in a doctor's office to display your shoulder blade; but not under a dress where it may shimmy its way down to your belly button.  Lesson learned, lesson shared!  At least I had the dress on....!)

(From Barely There's Website)

For anyone reading stateside, they come in a two-pack (the model has two on) I have found these at Macy's, at Kohls, at a Bali outlet, but even better - at half the price: "Barely There for Target" - exactly the same ($16 for two)!  They come in lots of bright colours, are extremely comfortable and are also less revealing than most bikinis, so being asked to strip off your top in a doctor's office really doesn't feel as embarrassing (although I think the more times you have to do that, the less embarrassing it becomes anyway....) - and as I said earlier, you can take one or two straps down, revealing a full view of your shoulder blades while keeping yourself covered and secure! 

(Just don't put them in the tumble drier - they WILL unravel and they WILL tie every single other thing in the machine together until the only solution is scissors. And a trip to Target.)

Anyway, those are my favourite and are comfortable to sleep in too, especially when weak muscles need support to stop any pulling causing extra pain. My only complaint with these would be when neck muscles get tight, then I give them a break for a day or two and opt for.....


Bra #2: the shaped bandeau
I went through a strapless phase for a while when I found any kind of strap pulling tightly on my shoulders to be painful (the strapless phase still resurrects itself when my neck pain increases and the racerbacks irritate it a little). I bought a couple of "Charmed" brand strapless bras from Macy's - with detachable straps, (so one strap could be added if necessary).  These ones don't have a clip at the back - so no metal to dig in to sensitive vertebrae; can step into it or get it over your head (if you can manage that) and it has a little more shape:

(Image from here)

I can't seem to find them on Macy's website, but I have definitely seen them there recently and also in a Maidenform outlet (yeah, we have a great outlet mall very close by...)


Bra #3: the totally strapless bandeau
The other bandeau-style I like is by American Eagle's "aerie".  It's a bit tighter around the top, with no strap options, so on days where I have some inflammation I prefer not to wear it, but generally it is very comfortable and stays in place very securely - moreso than the "Charmed" one (although neither of these have ever managed to slip down to my waist!).  Plus, it comes in very cool colours too...

(Image from aerie)

Bra #4: the 'some tops just NEED a 'real' bra

This one fits some of my criteria, but is definitely not an all-day bra for me right now.  Honestly, this is probably because of my rib involvement, so for someone with 'just' shoulder issues, it might not be an issue.  It is strapless, racer-back, front fastening, and has a bit of shape.  It does have little metal adjustable clips, but because of the racer back, these can be positioned in a way where they don't affect the shoulder blade at all. The lace is very soft and means the 'tightness' from a single strap is evenly distributed - much more comfortable.  My only problem with it is that it has thicker squares of material where the edge of the underwire would be and this presses on a sensitive rib 'trigger point' of pain for me.

(Pic from Maidenform. not the best but it shows it from the back... 

for the 'sexy model-in-a-bra' photo, click on the link)

Bra #5: the 'some tops need normal straps' option

Also from Barely There (appropriately named, I guess!) I have found this one to be the most comfortable when I need non-racerback straps.  For me, this means the 'normal' straps do go right across my scapula, which is still super-sensitive, so this is the most comfortable option I've found.  It does have a normal back closure and I probably couldn't have managed it for several months after my surgery, but my right arm can contribute a little something to that 'swivel' now, so it does work!

(Image from Barely There)

Bra #6: Intelliskin sports bra
My newest purchase.... I decided to purchase an Intelliskin zipper sports bra to see how it compared with the T-shirt (which I posted about here last year).  The T-shirt is helpful in supporting my rib pain, but it is still very difficult for me to get on and off - I can do it ALL BY MYSELF NOW!! - but it is pretty awkward, and it is very hot for summer.  The zipper collection came out after I already had my (complimentary - lucky me!) T-shirt and I decided I'd try the sports bra for the summer.

(Image from Intelliskin - there are better images of the back on their website, 

but it wouldn't let me save them)

I've only had it a couple of weeks and the instructions say to wear an hour or so a day initially to let your body get used to the posture and the muscles it supports and stimulates (more info at Intelliskin's website).  This was ordered specifically to help my scapula stay in the correct place, so it's going to take a while for it to get used to feeling different - it's been so used to being in the 'wrong' place for so long, and my muscles really don't know what's going on, so I am taking it slowly (both on medical advice and the 'listen to your body' advice). I do find the elastic strap begins to push in at my ribs (on the sore points) after I've had it on for a while - that will be something that will improve with time.

In terms of bras, I think it meets all my requirements - no metal bits, no uncomfortable straps, no metal to dig in, front fastening, no wire, and no seams that dig in, but it's definitely a full-coverage sports bra (which is what it is designed for).  It is very tight, so it feels like good support right across my back, shoulders and front, but that also means the zip is very tight - I can do it now, although it is still a bit of an effort, so it would definitely have been easier than the over-the-head option last year, but I might have needed some help with the zip.

I do feel when I am allowed to increase my exercises, it will be much more beneficial - at the moment the idea is it is 'helping' my body know the correct position to be in, and assisting with that while I do my very minimal exercise regime.

For anyone wondering about sizing - I am on the small side of the small measurements they give on the site, and it is a very neat (probably perfect) fit on me.  I did wonder about getting the extra small but I made the right decision, so I'd say they are quite small-made.


Also - an important factor (for me) is that all the bras above are not a chest measurement plus cup size - this makes them much more flexible for adjusting/ tightening/ loosening in response to pain as it gives them a bit more flexibility of fit and less rigidity.


SO.... to any men who made it this far - betcha never knew how complicated that could be!


I do hope that somebody somewhere finds the help they were searching for.... the help I couldn't find when I searched before.


And I'm not sure whether this entire post is actually helpful or crazy, so this seemed perfectly fitting:

~ Marilyn Monroe ~

Two years, Many Lessons

Two years ago today I slipped and fell down a few stairs, well and truly wrecking my shoulder.  Never for a moment did I expect I would still be dealing with the consequences today..... and, I now know (details for another blog entry) I'll be dealing with them for a lot longer.

The past two years have brought with them tears, pain, fear, worry, anxiety, stress, feelings of failure and inadequacy, doubt, and more.  They have also brought many positive lessons, so today I want to focus on those.

~ PATIENCE ~

 ~ STRENGTH ~

~ DETERMINATION ~

~ RESOLVE ~

~ PERSONAL GROWTH ~

http://pinterest.com/gmun22/

Rainbows

Enough said!

From My Pintrest Board

Spot the Difference

It has been a couple of weeks since I blogged.  It feels like March has just disappeared this year.  I have probably spent half of it asleep and the rest of my awake time split between physio and lying on my bed with my ice machine anyway.  I really did have a rotten bug, coughed far too much for anyone, never mind the current state of my shoulder - I still don't feel like I'm completely over the bug yet, the cough is kind of lingering, but not too bad anymore and my glands still feel a bit swollen, my throat's still not quite right - not enough to really make me say it's making me ill, but definitely enough to say it's still hanging around. And I know any extra stress on my body just makes me exhausted just now, so not much more I can do about that... apart from the sleeping!

Friday was my birthday.  It definitely led to a lot of reflection, thinking about this past year and how much I really have improved, but also realising how far I still have to go and this time last year, as I've said before, I really thought I'd be back to normal by now.  It was, however, a big improvement on last year's birthday - not that that would have been hard!

I was comparing photos, so I did this:

On the left, last year's birthday.  Turning 30 with my super-sling on was definitely not a high point of the year.... Note the arrows: 

 - My SLING!! Permanently attached at this point

- You can almost see my socks and leggings - I couldn't put my own socks or shoes on at this point, and even the leggings were awkward and a bit of an effort to get on - but I could only wear those, or sweatpants, because I could not fasten buttons or ties; also my leggings were pretty much the only thing that fit me properly because I had lost so much weight in the time between injury and surgery because the pain made me feel so sick all the time.  This year I am about a stone (14 pounds) heavier - I am a size 2 now; no more double zeroes! - and I am delighted about that, so I am announcing it here.  In public!!

- Top: a vest/ tank top that I could actually step into and then put my arms through the straps - with help - getting anything over my head on my own was impossible, and even a baggy T-shirt required help... so I lived in the tank tops and cardigans (which I also needed help getting on)

- My hair:  washed in the kitchen sink by my Mum the day before so I would have clean hair for my birthday, and obviously just left to dry on its own since I couldn't style it; also spotty face from the stress, no make up because it was almost impossible... and also, I really didn't have the energy to care!

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On the right, turning 31, one year and 3 weeks after my surgery... These arrows:

- NO sling!! In fact, my right arm is 'holding' the cake box (actually it's not really taking any weight yet, but it can reach it...)

- Boots! With laces! Tied by me! (I do still have to sit on the floor to tie my laces/ put my shoes on, but it's still progress.)

- Tights! Try to put on tights one-handed and then you will appreciate this achievement!

- The arrow on my shoulder is actually pointing to my dress - which goes on over my head, no zips or buttons (that might still be a good thing), and which I can get on and off on my own.  I actually bought this dress last summer and I tried it on in the shop and had to call my mum to come and help me take it off - again, marked improvement.  The little things add up!

- Also, given that my entire health details are available for all to see anyway, why not point this out too.... I am wearing a BRA under that dress!  Still soft and wireless and carefully selected so the straps don't press against my sore bones, but this is also progress!! 

- Styled hair, pink hair (dyed with my own left hand), the ability to wash my hair on my own, style my hair on my own, and put on make-up.  To be fair, these are all currently done left-handed (totally ambidextrous) but last year even that was painful - actually, I wasn't even supposed to use my left hand for much at this point last year according to the Dr's instructions as it could still pull against the surgical area across my back.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Plus, we went out for dinner.  I still had one pillow with me, and I do still have to make sure I am adequately drugged to survive any trip out, but again, it is all baby steps and they add up.

It can be quite frustrating for me trying to examine my progress day-to-day, as it is slow.  I don't see big differences, because it's not happening like that.  Having a visual comparison really helps me to look back over the past year and realise that I have made huge steps forward in what I can do now - all because the baby steps add up.

And, yes, I wish it was faster, I wish I could just work harder and see results quicker, but I think it has been pretty much established that isn't going to happen; this surgery doesn't work like that. So being able to play 'spot the difference' between the photos was a pretty positive mental exercise for me.  And I hope that next year's birthday photo will just be a normal photo of a normal me ... actually, being upside down or hanging from a flying trapeze or something similar would be even better...! Watch this space!

A day to look forward to:

“When you realize how perfect everything is you will tilt your head back and laugh at the sky”

  ~ Buddha

Life is a brick wall...

My first Feldenkrais appointment was interesting, but I don't really have much to say about it yet.  The practitioner was really lovely and I got a great vibe from her; I am optimistic it could be helpful, and so is she; but it takes a couple of days to really feel how my body will react to the treatment.  I also have some online lessons to listen to for visualisation and then I will see how I feel about moving forward with it.  I did have quite a strong response to today's session - which seemed very gentle at the time, and was not painful at all - but an hour later I was in my bed with a raging headache and fell asleep for a while this afternoon (very unusual for me to sleep during the day). I know that's not unusual with some therapies and have experienced similar with reflexology but then felt much better the following day, so I drank lots of cleansing herbal teas and water and I am keeping an open mind - and planning to do some reading on it and try the online sessions over the weekend and see how things unfold.

But it's the weekend, yay! I don't usually feel that way because it's not really any different from any other day for me; but I feel like this has been a tough week, so I am pleased to have survived it!  This quote/ poster/ analogy I found on Pintrest (surprise surprise) seems to sum up my week... my year.... probably life for everyone:

 (I'm not entirely sure the best way to reference every quote from Pintrest - this one took me to a 'nothing found' Tumblr page; but it's not my quote so whoever came up with it gets all the credit... I just don't know who you are, sorry!)

To be honest, it'd be pretty helpful to have a shovel, or a ladder; or perhaps a wrecking ball some days; and then there's always eye make-up remover, tissues, moisturiser... and a new day.... but it's still a great analogy.

It's not what you look at that matters, it's what you see.

  ~ Henry David Thoreau

Feldenkrais

Today (well Friday, I've still to sleep, but it is after midnight...) I have my first Feldenkrais appointment. I don't know an awful lot about it so I will learn much more at the session from the practitioner but it is somatic re-education - basically, I'm hoping it will help with the neuromuscular regeneration and help my brain form new (or re-form..?) neuromuscular connections and help in my recovery of movement and strength.

I stumbled across it a couple of weeks ago (actually while searching for "frozen scapula" on Google, realising my blog was the top hit - and that certainly wasn't very helpful in learning more about it - and then clicking out of sheer curiosity on a piano playing forum that also came up on Google's first page of "frozen scapula" searches).  Incidentally my specialist physio endorsed both the Feldenkrais method and some piano exercises... soon I will be better at scales than ever before!

I read a bit about it and it just seemed to fit with everything; I got a really good gut feeling about it.  From what I read it seems to be about helping your brain and body communicate better, enhancing movement in everyday life, but also for athletes and dancers (and helping with assisted movement in ill or injured people).  After the benefits I seem to be getting from trying to utilize muscle memory in my exercises, this seems like another new thing to try; a new approach that will fit with everything else I am doing.  I am really hopeful this will be a positive thing.

The quote is from the creator of the method, Moshe Feldenkrais, and the image came from this site.

“Imagination is more important than knowledge. Knowledge is limited. Imagination encircles the world.”

  ~ Albert Einstein